Acceptance Archive

Beat The Heat

– 11 August, 2014

“What dreadful hot weather we have! It keeps me in a continual state of inelegance”. ~ Jane Austen

It is incredibly hot this summer. I hear people complaining about it all the time. Nevertheless, they all still seem to be able to go about doing their daily task. For them, it’s basically an annoyance or at the most, it presents some discomfort. For me, it has way more damaging effects. As soon as the sun’s rays hit me, it sucks every ounce of energy right out of my body.

At first, I thought heat affected everyone with MS in the same negative way. But I see news stories of people with multiple sclerosis running marathons and participating in bike events. I find that incredible! I can barely go outside for 10 minutes without wilting in the sun.

How are they doing that? Am I in the minority?

I have a cooling vest that is 5 years old. It helps, but not for very long. My friend, Dave Bexfield from ActiveMSers, suggested I get a new one. Cooling vest technology has improved over the years and there are a larger variety of styles available as compared to the recent past. He recommended a couple and I chose the one that best met my needs.

That was great advice because using my new cooling vest has really worked for me. Besides just staying in the house, it’s pretty much the only way I can think of to beat the heat.

So, I need some help. What’s the secret?

How do you deal with the heat?

Tags: ActiveMSers, annoyance, cooling vest, Dave Bexfield, heat, Jane Austen, minority, MS, multiple sclerosis, multiple sclerosis symptoms, summer

Sunshine And Rainbows

Nicole Lemelle

– 4 August, 2014

“But better to get hurt by the truth than comforted with a lie.” ― Khaled Hosseini

Yesterday, after a doctor’s appointment, I got in my car and the radio was playing “Happy” by Pharrell Williams. I really like that song. Hearing it makes me feel so good.

The next song to play was “Rolling In The Deep” by Adele. I’m married but I can still relate to its “lost love” inference.

The melancholy message of “Rolling In The Deep” is totally opposite from the “Happy” song. Nevertheless, I love them both.

I see my blog as comparable to that radio station’s sequential music programming. Consequently, sometimes it’s happy and sometimes it’s sad.

Recently, I received a few comments and emails asking me why my posts are so negative. For those people that asked, I’ve decided to answer them here.

I didn’t realize so many of my posts were perceived as negative. I went back and looked and from my count most aren’t negative. They just reflect my life. I write about my journey living with MS. In doing so, I chronicle my experiences and feelings. And just like that radio station’s playlist, sometimes I’m up and sometimes I’m down.

Unfortunately, my life is not a Hallmark card. It’s not always sunshine and rainbows. If I pretended it was, this blog would be full of lies. I promised myself that my writings will only tell the truth and sometimes that truth is ugly. So if I can’t always see the bright side of living with a chronic debilitating disease, please forgive me.

I am just like everyone else, I have my good days and I have my bad days. And I’m happy to say that my good days out number my bad.

Tags: Adele, autoimmune, happy, Khaled Hosseini, love, MS, multiple sclerosis, music, Pharrell Williams, radio, Rolling In The Deep, sad

Living Cliché

Nicole Lemelle

– 14 July, 2014

“We have to dare to be ourselves, however frightening or strange that
self may prove to be.” – Mary Sarton

I wish I had a boring life.
I would be a mom with two kids and a stay at home wife.

I’d watch TV half the day.
Then shop the other time away.

I’d have lunch with friends.
Then, the next day, meet them again.

Go dancing on weekends and stay up late.
Every night, dinner with my husband is a usual date.

No medicine to ingest. No shots to inject.
I can go all day, no need for rest.

No doctors to see. No nurses around.
I’m always happy, you never see me frown.

I wouldn’t have to explain why I’m in a wheelchair, because there would be none there.

I would go to the movies and watch it from beginning to end.
I would run at the park with all my old and new friends.

I would sleep all day by choice.
And when I spoke, everyone would respect my voice.

No more smiling out of fear.
I’m the best at everything, the envy of all my peers.

My husband would be my husband, not my caretaker or nurse.
I would love that the most, because that part hurts the worst.

Am I wrong for wanting to be like everyone else?
I’m sad that I feel this way, but I really wish my life were a cliché.

Tags: caretaker, Cliché, doctor, happy, husband, Mary Sarton, MS, multiple sclerosis, nurse, park, peers, run

Pure Magic

Nicole Lemelle

– 7 July, 2014

“Hope is a good thing, maybe the best thing, and no good thing ever dies.” – Stephen King – The Shawshank Redemption

I am trying to live beyond MS. It has produced so many obstacles in my life that I can’t see anything but the negativity that arises from its poisonous grasp. The disease comes with countless constraints that induce me into becoming a prisoner to its daily whims.

It stunts desires, kills cravings and destroys aspirations. Sometimes it feels as if it’s choking the life right out of me. Even thinking of it now leaves me breathless.

MS hurts. If you let it, the pain of the disease can pull you down further than hell. Lower than you can ever imagine. The whole magnificent emptiness that is MS, wants to control your life and destroy any semblance of happiness.

In my fight to remain in control my main refuge has been hope. Hope is the only thing that keeps me sane. Hope brings me clarity. It sometimes takes me away from MS. It allows me to focus on a particular instant of MS free happiness. And those moments, when I forget I have MS, are nothing short of magic.

Pure magic.

Tags: Andy Defresne, choking, control, happiness, hell, hope, life, magic, MS, multiple sclerosis, obstacles, The Shawshank Redemption, Tim Robbins

It Was A Success

Nicole Lemelle

– 30 June, 2014

“Persistence and resilience only come from having been given the chance to work though difficult problems.” – Gever Tulley

I recently received a suprapubic catheter. The surgery was completed with no problems or complications. The main reason I had surgery was I no longer held complete control over my bladder function and the catheter will help me regain that control.

It was an outpatient procedure that lasted an hour and a half. My urologist and his team made me feel so comfortable during the preoperative instructions and evaluation that I urged my mother to stay home. My husband was there and that was enough support.

Despite my comfort level with my doctors and the surgery, I still had the normal pre-surgical jitters.

So to ease my doubts, I persistently played in my head the reasons why I was getting the procedure done. I remembered the sleepless nights. We were waking up every three hours to use the restroom. I vividly recalled the times I returned home from a night out wearing wet soggy Depends. I called to mind dozens of ruined outings due to a weak bladder and the endless anxiety about the “restroom situation” every place I went.

I used all of these memories as my motivation to continue with the surgery.

Now the big question is…

So, was it worth it?

The answer is…

An overwhelming YES! I would do it again tomorrow.

It’s been less than a week but so far so good. And as we all know, there is a learning curve with everything. So as I learn, I will let you know. But for now it seems to have worked out.

It was a success.

Tags: anxiety, bladder, Depends, Gever Tulley, incontinence, MS, multiple sclerosis, outpatient, persistence, resilience, restroom, suprapubic catheter, surgery, Urologist

A Friend Indeed

Nicole Lemelle

– 9 June, 2014

“Alone, all alone
Nobody, but nobody
Can make it out here alone” – Maya Angelou

Lately, I have been feeling down. Unfortunately this is nothing new. Two to three times a year I go into a “funk”. Not sure what it is but I really hate when it happens.

I mentioned this to my MS support group and after hearing about my troubles, a fellow MS group member, invited me to hangout with her for the weekend.

Sue, who has become a good friend and confidant, recommended we attend the New Orleans Oyster Festival. I agreed and we set a time and chose Sunday as the date.

Once the big day came, I was so excited. As soon as I woke up I began getting ready. As I was putting on my clothes, I could hear the patter of rain on my bedroom window. I looked outside and sure enough it was raining. I felt like crying. Then the phone rang. It was Sue. I just knew she was going to cancel. I answered the phone with a melancholy hello. She ecstatically answered back, “You ready?”

I said, “Sue, it’s raining.”

She replied, “If MS can’t stop us, how we gonna let a little rain stop us? Girl, put on a hat and let’s go!”

So we met on the Riverwalk in the rain. We were able to find some shelter and settled in to eat our charbroiled oysters and shrimp po’boys. The sun even peaked out and gave us a thirty-minute reprise so we could see the bands play music and watch an oyster-eating contest.

On the way home, I just felt so happy. Yes, my issues were still present but for a little while I was able to escape the worry and tension that always accompany my problems.

It’s funny how friends and family can come through just when you think no one cares. Yes, a friend in need, is a friend indeed.

Tags: charcoal broiled oysters, chronic illness, crying, funk, happy, Maya Angelou, MS, multiple sclerosis, New Orleans, New Orleans Oyster Festival, rain, shrimp poboys, support group, weekend

One Day At A Time

Nicole Lemelle

– 2 June, 2014

“Depression is the inability to construct a future.” – Rollo May

Last month was a rough one for me. Physically, I was about the same. Emotionally, I was a wreck.

I was basically doing all the things I should not do. That includes, constantly thinking of activities I can no longer participate in. The more I thought, the more I cried. At first it was behind my husband’s back. Then it was right in front of him. I couldn’t control my emotions. I couldn’t hide the anguish any longer. I began to believe that MS was taking over my life. The pain was ringing in my head non-stop.

I consider this a personal low. I’m not proud of my behavior. I should have known something was up when I lost interest in the pastimes that keep me going and motivated.

But finally, I took a real look at myself. I focused on what was happening to me and I saw a depressed person.

How could I miss this? It’s simple Psych 101.

Thankfully, my husband suggested I visit my psychiatrists. So the next day I did. He increased one of my medications, but I still have some personal work to do.

The social worker I see, suggested I find something to keep me busy. I remembered that I already have that here with you guys. So I’ve come full circle, running with open arms, back to my online family. I’m right back where I started, but now I’m healthier and happier.

And I’m taking it, one day at a time.

Tags: Depression, medication, MS, multiple sclerosis, psych, psychiatrists, Rollo May, social worker